Laughing in the face of normality

I'm celebrating today. It's my 8 year wedding anniversary (Happy Anniversary to my wonderful hubby x) and I'm also celebrating my departure from normality. 

What is normal anyway? Well the dictionary says normal is "conforming to a standard; usual, typical, or expected." Well I'm not happy with that definition! So why am I displeased? I met a friend out walking today, I told him about my latest cancer news, he told me about his problems. He didn't feel quite right, not normal. He struggled to use the word depressed in the same way I struggle to say cancer. Chatting helped. It helped him to see that his feelings are to be completely expected given his current life changes. It made him feel, dare I say, more normal. 

It is past time that we compare ourselves to this fake notion of normal...there really is no such thing. Normal leads to exclusion and labelling.  Our norms are shaped by our cultures and nudged along by media, current trends, business, law, etc. What is normal in one culture could be seen as dysfunctional or abnormal in another. And yes of course,  while definitions of normal help us to discuss how we expect people to interact with us, or help a doctor plan treatment, these definitions should never serve to exclude, which they more frequently do.

This is why raising awareness is important to me. Not just about cancer but about health, emotions, feelings. When we hide behind our masks, when we don't talk, discuss, learn, we become ignorant of what is really normal, that there is no real normal. If we could only spend 5 minutes each day talking to your friends, family, colleagues, neighbours, telling them how you really feel, not judging yourself or them but just accepting, we would slowly come to realise that we are all the same really. We are all just getting by in this crazy world.

"Cover your mouth!"

...are the words I'm endlessly repeating to my 6 year old daughter as she coughs and splutters her way into the room. As parents these are things we will often say to our children to be polite, teach manners and to prevent spread of germs. Never more have these words been more important than at this current time to me. I'm at day 8 of my 1st chemo cycle and the drugs are successfully reducing the number of blood cells in my body. When white blood cells are lowered your immunity to disease is weakened and you are at risk of serious infection. Coming into contact with someone with a common cold or sore throat can quite easily put you in hospital. Sounds dramatic but sadly true. I'm now looking at both my children as if they are carriers of the Bubonic plague! I'm covering my nose as I walk past someone sneezing in the store,  I'm scanning people to see if they have any bugs before I step closer to them and it's now harder to get into my house than Fort Knox! I'm becoming neurotic - well more than usual!

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Othersymptomssideeffects/AvoidingInfection.aspx

And for today's news...

When I was a little girl and I had heard that someone had cancer, or had passed away from it, it was usually a much older person, someone of my granny's age. It was rare to hear that someone in their 20's, 30's or 40's had this dreadful disease. I hate to hear of anyone, of any age suffering from any disease. Despite the advances in technology, pharmacology and science our health is getting worse. Cancer, diabetes, heart disease can strike any age group. I really think that globally we need to address this problem and ask the biggest yet unanswered question...WHY?

We need to become more bodily aware. We need to get rid of our Victorian attitudes to our bodies and their functions and to address the issues most affecting us in society. We need to stop being frightened of discussing things for fear of raising difficult, embarrassing, or politically correct questions. We need to make ourselves and our children more responsible and aware of our own health. It is not a doctors responsibility to keep us well...it is ours!

One article from today's news highlighted these issues. Kris Hallenga was only 22 when she went to her doctor about breast lumps. No-one, not even medical professionals even considered that breast cancer could be the cause. She was 23 by the time she was officially diagnosed with stage 4 cancer. She was told that she only had about two and a half years to live, that was over 5 years ago. She has found a purpose to life by setting up a charity called "CoppaFeel!" and raising awareness in schools about the importance of early diagnosis. 

I think she is an extraordinary young woman doing extraordinary work. Her story will be shown on BBC3, Wednesday at 9pm. (What a pity the BBC didn't think this issue was worthy of being shown on prime time tv. Another example of our British sensitivities getting in the way of building knowledge and awareness!)

http://www.bbc.co.uk/news/health-26648163

 http://www.bbc.co.uk/programmes/b03zf3tg

http://coppafeel.org

Spoiling myself!

Despite my mouth still tasting like a budgie's cage after weeks of neglect, I have managed to do two lovely walks with my dog, a total of 4 miles, might I add, and been on a shopping spree. Another small belated birthday gift for hubby, shoes for children, and a pair of leggings reminiscent of similar ones I used to wear in the 80's and I'm feeling pretty good (although that may have something to do with the cream egg that I crammed into my cake hole!) despite the poison circulating in my veins. Maybe the sun shining has helped too! 

How to lose the best part of a week

A large projectile vomit into the loo on Wednesday night, told me the chemo was doing it job. Two more smaller ones later and I went to bed deflated and tired. I made sure that I took the anti-emetics and steroids to stop the nausea and vomiting and although I had no more up close and personal meetings with the toilet bowl, the nausea was reminiscent of my pregnancy days and hyper-emesis. Thursday and Friday was spent feeling nauseous and listless and bed was my favourite place. Saturday and today, although my mouth tastes like the bottom of a budgie cage, I am starting to feel more normal. I am now eating for Scotland! My healthier eating plan has been casually tossed to one side and I am doing all I can to put some weight on. I knew that I would need to do that, survival is key here! But it's great eating what the hell I want without thinking of the consequences! I'm looking like a sack of bones just now so bring on the plain chocolate digestives and whatever else I can forage in the kitchen cupboards.

One down...

There is no going back now. It's swimming about inside me. I feel ok so far...that's good. I'm waiting on feeling different...I know I shouldn't but I can't stop it, I'm impatient that way. How ridiculous, impatiently waiting on feeling crap! But then I'll know how it feels, based on me and not how others report it. The staff were great. I got my fluids up and the various chemical boluses. Red and clear. I am home now. A lovely walk with the dog keeps things normal. The children will be home soon. I know they will be looking for chemo mum. They won't see it yet, not for a couple of hours anyway. I was pleased that the medical staff listened when I told them that I suffered from hyper-emesis with my two pregnancies...they've sent me home prepared, with the good anti-emetics (evidence has shown that people who have suffered from hyper-emesis/travel sickness are more at risk from nausea /vomiting side effects of chemo).

Get me..wearing my wonder woman tee!

Sign on the dotted line

Another hospital appointment today in a long list of appointments. I am all ready, the surgery has been done, the numerous scans, blood tests, echo all in preparation for D day tomorrow. I've signed on the dotted line to receive an intravenous injection (six to be exact) of toxic chemicals into my blood stream. I'm ready and waiting for the 'potential' side effects of damaged veins, bladder irritation, reduced bloods cells, increased risk of infection, neutropenia, bruising, mouth problems, hair loss, nausea/vomiting, diarrhoea/constipation, tiredness, menopausal symptoms, dry nose and eyes, skin reactions, nail changes, heart changes and possible allergic reaction. Deep Joy!

Countdown...

I've been getting ready for D day...explaining to my children that the 'nasty' medicine will be given to me on Wednesday so that they too will be prepared for mum looking like crap! I've got my new 'hair' ready for the swap over. My teeth have been checked and my heart has been given a once over...all is looking good...I couldn't be healthier! Huh! How annoying that the big C came knocking on my door!

A good distraction through this though, is the exciting musical that my sister has written and is currently crowd funding to put on stage in October. The musical is called "Your Disco Needs You". It uses the music of Kylie to tell an excellent feel good story to promote breast cancer awareness and to raise funds for the 3 cancer charities that Anita feels passionate about. Anita has even managed to get Kylie's choreographer, Tim Noble, to choreograph all of the dancing for the show! It sounds great but it will take a lot of hard work and some investment through the crowd fund so I really hope that if anyone is reading this blog that they will donate (even a £1) and share the cause on their FB pages or websites to help carry it off.

A glimpse of the silver lining

I attended another appointment today. A different speciality, same clinic..my face now so familiar the staff are calling me by my first name. The usual one hour plus waiting time (which has been the norm for every consultant led clinic) was less stressful. I wasn't there for bad news or pathology results but to discuss the future of my gynaecological parts. Despite having my notes in front of her, the doctor was surprised to learn of my run in with the big 'C' especially as it hadn't been so long since the genetics referral.  I'll need to wait a tad longer before my ovaries (and more than likely my uterus too) will be removed...just in case (thankfully I had made full use of mine). This nasty little BRCA gene has a lot to answer for! 

This afternoon I also caught a glimpse of the silver lining...it was in the form of a very likeable and interesting woman. Our lives are going to overlap for a while and I like the idea. I like it when a stranger comes into your life and it feels right. We discussed the future and how it was an uncertain road...not one that I would have chosen on the map..but some things are meant to be.

Sunny days and new beginnings

The clouds have finally lifted and the sunshine seems to promise the start of spring..at last! 

Me and my shadow went for our usual walk along the country roads. It's beautiful. I feel healthy, free, uplifted. Is it the sun or this strange inner peace that makes me forget my current 'issue'?  I'm not thinking about building my cake design business, or finding suitable part time employment, worrying about the usual family issues of children, money, etc. I'm enjoying the now. I'm feeling the sunshine on my face. I'm enjoying the beauty around me. And I'm going to enjoy it...every second. Stay in the now...I'm not letting the dread of chemo creep in...not yet anyway!

You are what you eat, think, feel and do!

I've always believed this.  It can be hard to be positive when you have a particular worry. The worries I carried about with me faded into the background and became unimportant on the day I found out I had cancer. I have thought countless times "why me?" "Why my sister?" We are both healthy, slim and eat what most would call a healthy diet. But when I took a really close look I believe I know the answer. Yes, I have a mutated gene (so does my sister), but a closer look at my diet told me what I needed to know. Several things were at play here first, I was chronically dehydrated. From morning to night I drank very little. Secondly, although I ate plenty of veg and some fruit and I hand prepared most meals from good quality produce, I ate a much larger portion of white refined carbos, such as pasta and bread. I loved pastries, cakes and biscuits and although I believed that I ate these in moderation, I would have a 'treat' most days...who doesn't?
Let's face it, the rates of cancer are increasing. 1 in 8 women will get breast cancer! The rates of breast cancer are highest in the economically developed countries of Western Europe and lowest in Eastern and Middle Africa suggesting it's our Western lifestyles that are typically to blame, such as our reproductive behaviours, weights and alcohol consumption, for example.
http://www.cancerresearchuk.org/cancer-info/cancerstats/types/breast/incidence/uk-breast-cancer-incidence-statistics#trends
I had been newly diagnosed with cancer when the BBC's main news story was "Cancer 'tidal wave' on horizon, warns WHO" There was finally some recognition that sugar and our diets play such an alarming role in this so called 'tidal wave' and we need to do something about it fast!
http://www.bbc.co.uk/news/health-26014693

I was already familiar with diet and nutritional information which supported an alkaline diet. I had read about the benefits of increasing raw foods in your diet and I knew about the damage that refined foods, sugar, flour etc can do to our bodies. I was interested about the problems that Candida overgrowth can cause and the myriad of symptoms that it can inflict on a body. I was also interested in the theory that some physicians believe that cancer could be caused by candida overgrowth...it is certainly linked to our poor dietary habits. So with my diagnosis I had to change. There was no point knowing all this stuff and carrying on as normal. I overhauled my diet. I cut out sugar (except a small amount of natural sugars that you find in fruit), refined flours, all meat (taking only fish occasionally), coffee and alcohol. Although I already ate a lot of green veg I increased the amount vastly and take as many alkalising vegetables as possible and I take a green juice most days. I take lentils,  almond nuts, and some grains and beans for protein, I use coconut milk and water for added sweetness if required. I take additional supplements (selenium, omega 3, etc) and take a minimum of 2 litres of fluid per day. I try to buy organic but our local stores are pretty poor for this and for a treat once or twice a week I take raw chocolate (which is pretty expensive but I love it!)

Has it all helped? Yes it really has! I feel more positive despite this 'cancer thing' and people are constantly telling me that I appear more upbeat. I feel clean inside. I no longer feel sluggish due to the bloating from too much yeast. In general, I feel really healthy. I am hoping to try and maintain some of this during chemo as this eating plan (I hate the word diet...it's a new way to eat!) will help to strengthen my immune system but it might be difficult due to the nausea I am told to expect, I can only try!
http://www.anticancerbook.com/rules.html

Awareness is empowerment

I watched my lovely little boy recite a poem today in front of his school. So proud to be his mum and to watch him grow into being the wonderful person that he is. I want to be here to see my children grow up and to give them the support that I never had as I grew up. Something I grieved for, for many years. I guess that is why awareness is such an important issue for me. Awareness of your own health and knowledge about what we can do individually for ourselves and others. I WILL NOT stick my head in the sand and deny what I need to know to make things better for me and my fellow humans.

The newspaper article that my sister did recently (with myself in the pics) has caused quite a bit of chaos in our family. Some were annoyed that we had made family issues public. I make this statement again as I did to my family... I will NOT feel ashamed or embarrassed that I have this crap disease (from which I intend to recover).  Awareness is key. Anita and I raised this awareness to protect our family. Can you imagine what would happen if Anita had kept this private. What position would I be in..the lives of my two children...not to mention the lives of our extended family and their children. That is partly the problem in our society. We have mistakenly been lead to believe that we should be insular and private. It's a great way for those who like to maintain fear to succeed in gaining control and power over others.

https://www.youtube.com/watch?v=lEV5AFFcZ-s

Oh no, not her again!

Those are the words that the medical staff will probably say when they see me before too long! I'm one of those 'difficult' patients...and proud of it! I attended my first oncology appointment today, to discuss future plans and set it all in motion. The oncologist seemed a nice guy but I'm not sure how he took it when I said that I don't want any ports or catheters and I didn't want a specific drug. He looked slightly lost for words as he discussed all about meta-analysis research and blah, blah (I won't bore you). I guess at the end of the day my aim is to be as informed and proactive as possible. I believe if you have to be poisoned with toxic drugs or any drug for that reason you should find out why, what it does, research to support it's use/nonuse. So many people are told that they need to be on specific drugs for the rest of their lives when a change to lifestyle and diet is all that is required. I want to be responsible for my own health thank you...not the health of the big pharmas bank balance.

On a more positive note (she says, climbing down from her soap box), my pelvic ct was clear...yeah! And my breast care nurse is supportive and professional. She is great at making me feel that she is on my side at every appointment I attend..thanks!

Raising Awareness

Anita has asked me to take part in a newspaper article to raise awareness. I am not very comfortable in the limelight but as the focus was on the BRCA 1/2 gene I thought it was important to take part.

Anita gave the reporter the information about us and on Sunday the photographer came out to her house and took some pics. We tried not to laugh when he told us he wanted some serious shots for the serious issue. I made some cross eyes at my sis to make her laugh!

The article was in the Daily Record today...

http://www.dailyrecord.co.uk/news/real-life/cancer-survivor-tells-how-diagnosis-3200733

Annoyingly, the articles full of inaccuracies such as quotes from me when I didn't give the interview, and other misquotes. But, I guess I will need to overlook that and remember that today's papers are tomorrow's chippie wrappers!